Two weeks in, frightened by meds, PMR and COVID Booster Shot
Hi! I’m 59 and WAS perfectly healthy and very active up until 2 months ago. Gosh, am I happy to have found you all. I was diagnosed (sort of) two weeks ago and was started on 25mg of Prednisone which provided great relief but I have many worries about side effects. I’m now down to 10mg and although still in less pain than before the meds, during the nigh the pain gradually returns. I take the meds in the morning and a few hours later I’m better again. Is this normal for PMR? Also, I’ve had 3 COVID vaccines and am due for the next booster but yesterday I happened to stumble upon some research on the correlation between the COVID booster shots and sudden onset PMR. Is this what’s happened to me?? I’m not anti-vax by any stretch of the imagination, just a little (lot) concerned. By the way, I’m seeing an internist next week to confirm diagnosis and discuss the way forward. Any advice, recommendations or help you can provide is welcome.
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Thanks for this tip. What is MSM? Anyone had any benefit from low dose naltrexone?
Your description of your pain is very common for PMR. I began taking my meds later in the afternoon so they give relief during the night and early morning. That was good for a few days, then I got a stomach virus. and
the progress was lost as it caused a flair apparently. Had to go back up for a few days. I do not get boosters.
I experience popping in my joints also. I call it creaky joints. Anyone else experiencing this?
Sorry to hear this. I lost a very close friend of mine a few months ago weeks after getting her fourth vaccine. She got covid after that one. She had a different type of auto immune. I told her to wait on that 4th vaccine. Not enough known about these vaccines. I got 3 and no more for me. Who knows what long and short term effects are. I’m on second taper down to 1 mg and feeling discomfort. Can live with this level as long as blood tests stay normal.
Yeah, dropping from 20 to 15 mg doesn't sound good. I've read many times that the maximum recommended reduction of prednisone once you've been on it more than a few weeks is 10%. I was on Plaquenil for a while but it didn't seem to do anything for me. For others I've read it really helps. It certainly sounds like splitting your pred dose is the way for you to go! If I remember correctly I think I had to split my dose until I got down to 8 or 7 mg. Guessing my metabolism was burning a single dose up too quickly. Best wishes to you on your journey!
Add me to the list of folks who developed PMR a couple of weeks after the Pfizer booster. It is still more a case of correlation rather than causation but I would hope there is notice being taken by researchers on this issue. 74 and put up with the pain for a couple of months to give my body the chance to see if the disease would resolve without resorting to medication. Started with 20mg. and now down to 5mg. and can't wait to get off the prednisone. I have been having migraines on a nearly daily basis and think it may be triggered by the drug (even though prednisone is sometimes prescribed for migraines).
From 25mg down to 10mg in two weeks is a very fast taper. Prednisone tapers must be slow to avoid flaring. My recommendation would be to see a rheumatologist for guidance in handling PMR and prednisone. Best wishes for relief.
Raven1955,
I wanted to share that I was put on Prednisone which my PCP Doctor prescribed because he said he was 99.0% certain it was Lupus. The pain was so severe I barely could walk or move my arms. I went on Prednisone 15 milligrams then one month later started reducing which I did tolerate however, it took me three months to get off totally. Within 6 weeks pain was back, shoulders, both arms, hands, and feet, worse than the onset. The second specialist/Rheumatologist finally diagnosed me, with PMR. I waited 8 months to get in. Her remarks were they shouldn't have pulled me off Prednisone, because full treatment is approximately 2 years, maybe a lifetime. I became ill or in so much pain after the Covid Booster initially, pain and weakness, especially in the arm I where I received the Covid Booster, and the same /shoulder has never stopped hurting. After 6 weeks post Prednisone, the pain was even more severe in my shoulders, arms, hands, wrists, and neck. So back on Prednisone 15 milligrams as per specialist #2 recommendations.. Feel I was lucky to have gotten the 2nd Doctor's opinion who has worked with PMR patients. Although I had to wait 8 months it was worth it. The first Doctor didn't run all the tests and I don't think he took me seriously for some reason. My Primary Care wasn't familiar with PMR but thought it was Lupus. This PMR support group has been a great help to me understand this invisible condition. I recommend seeing a Rheumatologist that is familiar with PMR. Sharing details on this site about what is working and what is not, has been very beneficial. So glad I found this support group and grateful for all the recommendations. Keep moving forward! We can do this if we try.
Ohh, I’m glad that you finally found someone to correctly diagnose you. I was lucky since my daughter and son in law are in the medical field and were able to expedite things for me. Although I started on 25mg of prednisone in October, I am now down to 3.5mg and doing well. I’m seeing an internist and having blood work done every month. He has and has had several patient with PMR and said that most, when well diagnosed and well treated have been off within 18 months. However he was quite honest about the others who have been on prednisone for years. Generally people with co-morbidities. I’m lucky that I have no other illnesses at the moment and am generally fit. I thank my lucky stars since I’m very much aware that it could all change overnight. 🤞🏻🤞🏻
Methylsulfonomethane. It is a dietary supliment that gives a supply of sulfur to the diet which is in many reactions in the metabolism. There is much about it on the net and requires no script. It has no known toxic dose and no side effects that I can descern. I take 3 grams every morning with juice and use the same one I buy for my horses. I have used it for years for their arteritis and for dogs also. You can get it for people, too. It has been shown to lower IL6. As to LDN, I use it currently as it lowers my "non-moving" pain and healed my small intertine wish was full of inflamation from Crohn's. How much of the pain was from PMR, it is hard to say. But worth a try and side effects are usually vivid dreams.